I’ve never really been afraid to talk about my skin disease. Truthfully, I’ve done everything I can to explain it but have only been met with people who fail to see the seriousness about it. June held our awareness week, and though I missed my chance then, I would like to take the time to do it now. I figured what better place to open the discussion than to the one place that I discuss everything else. I’ve struggled with the idea of how to not make it sound so gross, sadly though it just is. This disease isn’t pretty and I’m not going to try to make it out to be.
It was 2013 when I was diagnosed with the skin condition called acne inversa, but more properly known as hidradenitis suppurativa. I remember thinking that my inability to pronounce it is how I knew it’d be serious. It’s shortened to HS, or AI if you go with the former. It’s classified as an infection in the sweat gland and hair follicles that result in abscesses, commonly confused to be ingrown hairs. I’m terrible with definitions and paraphrasing, so I’ve decided to go with the Wikipedia version to help explain:
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) or as it is also known as Acne Inversa, is a rarely diagnosed chronic skin disease characterized by clusters of abscesses or subcutaneous boil-like “infections” (oftentimes free of actual bacteria) that most commonly affects apocrine sweat gland bearing areas, such as the underarms, under the breasts, inner thighs, groin and buttocks.
None of this sounds pretty, and it isn’t. Why try to make it sound as if it’s not as terrible as it feels? I refuse to even attach photos to this post because I’m just doing you a favor, truthfully.There’s no cure, and there’s no cause. Some people have triggers that cause flares be it food, sweat, stress, or hormones. I don’t know what mines are, but I’ve got the rest of my life to figure it out if I’m being truthful. I’m affected under my arms, my breasts, my groin, rear, and upper thighs. It’s not terminal, but it’s an autoinflammatory disease in which I don’t exactly know what causes it to inflame.
I’ve seen doctors for it, one lancing a cyst to only have three come back in its spot. When I went to the dermatologist and received my diagnosis, I remember his only advice being antibiotics, daily showers, and no more deodorant. Sadly, and obviously, that didn’t help and matters only got worse. I had surgeries almost two years later, both being in each underarm. It was a procedure of removing my sweat glands and the entire affected area. I don’t have under arm hair, but in some ways I also don’t have a underarm. It’s more of the flesh pulled up to make do. This is the only way doctors know how to help this disease, cutting us apart and taking out what may be the issue. For some of us, it doesn’t work. For others, it’s the solution they desperately needed. As of now, after three surgeries in one year, I’m flare and pain free.the downside is that my arms aren’t the only areas taken by this disease.
The closest to treatment our community has is Humira, the injection drug used for rheumatoid arthritis and severe plaque psoriasis. I have neither but I also can’t afford the drug. So, for the some who can’t have that, we make it work with home remedies; coconut oil with mixtures of tea tree oil (or cannabis if you can) and sometimes Vicks on the worst of spots to stop the pain. Some of us take epsom salts baths to calm some of the throbbing and redness. Lives of diet and exercise, such as water exercise, have become the new us.
This life of mines wouldn’t have been made easier if not for them, those like myself who are suffering and living with this. Because of these support groups, I’ve learned how to manage and find joy again in this world of pain. They taught me how to care for myself when doctors failed me. They all care about what every physician we’ve seen fails to care about – our actual quality of life.
When you see me I have gauze tucked in every corner that bends (except for my elbow and knees). It’s for my safety . One important thing to know it that my HS isn’t contagious. Never can I even infect or make someone else sick. Never could I ever spread this from person to person like AIDS or herpes. With my disease, other people are more likely to make me sick or spread an infection to me. I protect myself from the world because if I didn’t I would being seeing more doctors who don’t know how to care for me.
Chronic illness changes you.
Acne Inversa has devoured me. It’s swallowed me whole and turned me into someone I never expected to be. Each day is measured by spoons and every function or invite is cancelled or postponed due to pain or fatigue. I can no longer do what I always carelessly did before now. I can’t eat or drink without a sense of caution in my life. I’m not who I was five years ago, and I never will be.
When I see a photograph of girls in bikinis, I instantly stare at their chest or their arms and legs, not because of some weird fetish but because i can’t look away from of their skin. I stare at the skin of others more than I’d like to admit because I miss my only worry being my acne or my dry skin and eczema. I look at Dove commercials longingly because their smooth underarms fill me with envy and dread. I know the power of Photoshop with models but even my friends have caught me staring at their bodies wishing I could do everything so easily just one more time.
I can’t bend without holding my breasts. I can’t lift my child above my head or go too long without having to lie down from my swelling fingers or legs. This disease didn’t just scar my skin but it has scarred me. I cover up every single chance I get. Whenever I sweat I instantly get light headed quickly because of the heat I’m losing in so many other places. I spend more hours in my day resting and cleaning myself than I do playing with my daughter or studying for class. I can’t chase her, or have her jump on me unexpectedly. I constabtly worry about the smell or discharge. The anxiety and insecurity I have because of this truthfully makes me wonder what wrong I’ve done in life to deserve such a punishment.
There’s one thing that I can’t deny though: I’m not my disease. This is a big part of me regardless, but it isn’t me entirely. This is what I have to remind myself. It’s what we all in our group have to remind ourselves every day. I’m still a mother even if there’s a flare. I can still tickle her, kiss her bruised knee, and toss a ball to her when she wants it to go “boing boing”. I am still the friend devouring pizzas in a single sitting and making everyone else laugh, even if I have all the wind knocked out of me by the end of the day. I’m stronger everyday because I survived that day and the one before it. I am still capable of loving someone no matter how many scars cover my body. I’m still me, just with added fatigue and more pills stock piled on my bedside table.
I can’t remember who I as before this disease. Sometimes I don’t want to remember. I am who I am now, and this disease is a part of me. There’s no cure for now, but until they make one I want everyone to understand that just because my disease isn’t cancer doesn’t mean that I don’t struggle. Everyday is hard for me, every pain is always as hard as the last to endure, but I’m stronger each and every day because of this.